Monthly Archives: December 2012

The blog will be on hiatus through the holidays. Thank you for reading, commenting and sharing these past few months. I hope you all have a safe, happy and peaceful holiday and I’ll see you in 2013!

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I was going to start this out by saying that being an aspie has certain challenges. I was going to acknowledge how those challenges can be quite severe and then talk about the positive traits of Asperger’s in a measured, careful way.

But you know what? Screw that. Today I’m going to celebrate being an aspie.

I’m going to celebrate myself.

My Aspie Strengths (or How Asperger’s Has Made Me Awesome)

Many of my Asperger’s traits are double-edge swords, gifting me simultaneously with challenges and strengths. Impaired perspective taking? It makes it harder for me to work out people’s intentions but it also makes me nonjudgmental. Trouble with generalizing? That means I have to learn a similar lesson many times over, but gifts me with a dogged optimism and unconventional problem solving skills.

Curiously, some of my aspie strengths are a direct result of my funky wiring but many are coping mechanisms that I’ve developed to survive in a neurotypical world. Asperger’s has made me a survivor–forced me to adapt, by choice and necessity. The result is a unique set of strengths. Here they are, in no particular order:

I’m nonjudgmental. I take people at face value and will give someone the benefit of the doubt until they prove me wrong. A lifetime of being judged on appearance and first impressions will do that to you, I suppose.

I have a strong attachment to the truth. Telling it. Seeking it. Hearing it. If you ask me a question, you’ll get an honest answer. Perhaps more honest than you’d like. If you lie to me, I won’t forget it. I value honesty above many other traits–probably because I’m so bad at detecting dishonesty.

I’m curious. Insatiably so. I love learning, discovering, knowing. If you’re passionate about something and you want to share it with me, I’ll listen with genuine enthusiasm. My interests are wide-ranging and ever-evolving. My need for knowledge feels limitless, exciting and empowering. Give me an answer and I’ll have a handful of questions in reply.

I’m loyal. My attachments to people are few, but when I do form a bond with someone it’s a strong one. I will stand up for the people I care about in the face of a great deal of opposition. When Temple Grandin said that an autistic child will run into a burning building to save a person they love, she wasn’t kidding. That’s me in a nutshell.

I’m sincere. Perhaps naively so. I don’t have the patience or energy to be manipulative. I’m generally good-intentioned. When I do something for another person, I do it wholeheartedly. People often seem puzzled by my sincerity, disbelieving, as if being sincere is in itself some elaborate form of manipulation.

I have well-defined values. The black and white thinking of Asperger’s means that I’ve developed an elaborate and clearly delimited value system. This can be a blessing and a curse. There is a thin line between being principled and being stubbornly dogmatic. At most times, though, my values are my compass and my rudder, helping me navigate the ambiguities of a neurotypical world.

I’m an unconventional problem solver. I’m not afraid to ask wild questions or examine solutions that appear to have little hope of working. My instincts can get way ahead of my ability to verbalize them. Often, I’m told that things won’t work or don’t make sense–right up until I go ahead and do what I have in mind and it works. Or doesn’t. It’s a crapshoot, but that does little to dent my confidence and willingness to try.

I’m an optimist. I live in the here and now. I have few regrets. I view situations starting from zero. Aspies aren’t very good at generalizing from one occurrence to another similar occurrence, which I think leads to an irrational level of optimism. Sure something went wrong in the past, but (my brain always seems to say) this time will be different. Sometimes it is. Either way, I’ve found that taking the optimistic view of life makes me happy.

These are my strengths and superpowers. What are yours?

My Aspie Superpowers (or How Asperger’s Has Made Me Who I Am)

One of the myths of Asperger’s is that all aspies are savants–that we’re born with some profound skill, like the ability to name the day of the week for any date in history, draw the New York subway system from memory, or do complex mathematical calculations in our heads.

Some aspies are savants, but sadly, I have no savant skills. I’ve always been fascinated by people who do. I think it would be amazing to have a photographic memory or to instinctively understand a system like mathematics.

Like a lot of aspies, I do have a few overly developed traits. They aren’t at the level of a savant skill, but I’ve started to think of them as my aspie superpowers. They’re the things about me that people comment on as being out of the ordinary or above average. They’re a significant part of my self-identity:

I’m perceptive and detail oriented. I notice everything: changes and irregularities, patterns and habits. I can analyze the hell out of things. I see patterns where most people don’t. My affinity for details began as a coping mechanism, I think–a way to identify patterns in social situations that I couldn’t work out instinctively. Now it’s become my default mode for making sense of the world around me.

I have a high IQ. This may not seem related to Asperger’s until you think about what an IQ test is: logic, problem solving, pattern recognition. Especially pattern recognition. The question about what number comes next in the sequence? Pattern recognition. Which shape is missing in the grid? Pattern recognition. Is the sum of the odd numbers between 1 and 12 an even number? Yep, that one is pattern recognition, too. Or it is if your brain works like mine.

I’m calm in a crisis. If something goes wrong, I have an almost superhuman ability to separate myself from the situation and think clearly. Poor executive function combined with impaired perspective taking lets me focus on the facts at hand when others get overwhelmed by panic or “worst case scenario” thinking.

I’m dependable and disciplined. Both of these have roots in my Aspergarian need for routine. Once I get a routine in place, I can do the same thing day after day without tiring of it. I can keep the books, walk the dog, sort the mail–day after day, like clockwork–as long as it’s part of my daily schedule. I’m the kind of person people rely on. I get things done.

I’m determined. Perseveration has a huge upside. If a problem or task catches my attention, I’ll go at it like a doberman with a ragdoll. I’ll work at something long past the time when a more rational person would throw in the towel. A big part of success for me is simply not giving up too soon.

Okay, looking back on that list, it looks rather boring. There’s a reason The Scientist jokingly calls me “Data” at times. But Data saved the Enterprise as often as Picard, right? I like my boring superpowers. They’re useful. They’ve served me well.

Asperger’s or Personality?

The line between my aspie traits and my other more typical personality traits can be a fuzzy one. In the absence of Asperger’s would I still have the strengths that I do? Doubtful. I’d be a different person. Look at my list of strengths. Do you see compassionate, caring, or intuitive on it? How about spontaneous, sympathetic or a team player? I am all of things in varying degrees, but they aren’t my strong points.

My strengths are typically Aspergarian. Without Asperger’s I might be a less extreme form of myself–a blend of my current traits with neurotypical traits. I fear that I’d lose most of my superpowers, though I might gain other superpowers in place of them.

Do NTs have superpowers? Surely they must. I think The Scientist has social superpowers. He’s remarkably charming, persuasive, likeable, confident and intuitive. It’s as hard for me to imagine what he would be like with an aspie brain as it is for me to imagine myself as an NT.

Not that I ever really do. I like being an aspie. Sure it’s a pain in the ass sometimes, but take away Asperger’s and I’m no longer me.

I like me! Have I said that? Are you tired of hearing it yet? Because this is important. I’m autistic and I like myself. There are people who would find that hard or even impossible to believe.

I like being a little different. I like my aspie strengths and superpowers far more than I dislike my aspie weaknesses. Let’s face it, everyone has weaknesses. Everyone faces challenges. The perfect person, the perfect life–that doesn’t exist.

What Are Your Strengths and Superpowers?

The idea of a distinct set of aspie strengths has its roots in Tony Attwood and Carol Gray’s “The Discovery of Aspie Criteria.” They proposed seeing Asperger’s as a set of strengths and talents rather than a syndrome of deficits. If you’ve never seen the list, you can find it in that article–scroll down a few screens until you see the numbered lists. If you haven’t yet identified your aspie strengths and superpowers, it’s a great place to start.

The “Reading the Mind in the Eyes” is meant to test Theory of Mind (ToM) or the ability to recognize and understand another person’s mental state. It’s supposed to be a more advanced test than “Fear, Anger, Joy“, which tests simple emotion recognition.

The original 1997 version of Reading the Mind in the Eyes consisted of a set of 25 photos showing the area around the eyes and a choice of two possible mental states for each photo.

However, the limited number of items on the test combined with the choice of only two responses resulted in a test that wasn’t very reliable. Parents of autistic children were scoring as far below the controls as the AS/HFA group was. Additionally, the original version of the test included some expressions for basic emotions (happiness, sadness) which were considered too easily recognizable and not a true test of ToM.

The revised version of Reading the Mind in the Eyes contains 36 items with 4 answer choices for each item, increasing the possible range of scores along with the difficulty level. It also contains a balance of male and female photos, a choice between more closely related mental states (i.e. not a choice between opposites like sympathetic/unsympathetic), and is composed entirely of photos representing complex mental states.

In the original study to validate the test, the AS/HFA group scored a mean of 21.9 while the control had a mean of 26.2. However, the AS/HFA group had only 15 participants versus 239 controls. A sample size of 15 is small, especially for study in which participants only have to complete two questionnaires (the AQ and Reading the Mind the Mind in the Eyes. I’m curious why the researchers didn’t make an effort to obtain a larger AS/HFA sample when they had the resources to administer the test to so many controls.

Pros and Cons of the Reading the Mind in the Eyes test

Pros:

Tests recognition of complex mental states

Balanced presentation of male and female expressions

Offers subtly similar answer options to increase difficulty level

Self-scoring

Provides a list of items that were answered incorrectly (with the correct answers)

Cons:

Validation study relied on a small sample size

Sets up artificial constraints not present in real life (limited choice of options, time to study “frozen” expressions)

Allows for unlimited time to answer each item

Taking the Test

You can take the test here. It’s all on one page. Just look at each set of eyes and then choose which of the four options best describes the state of mind that the pair of eyes conveys. Ideally, you should make your choice as quickly as possible.

It took me a little over 5 minutes to complete the test. I feel like I spent too much time on a few of the photos. For an idea of how unintuitive my process is when I take this kind of test, at one point I found myself unable to decide if a particular expression was content or defiant. These are very different mental states, but I ended up guessing (correctly!) because I couldn’t conclusively pick one over the other.

Once you’ve selected an answer for all 36 items, click the “get score” button and your score will be displayed at the top of the page.

Scoring the Test

Your score is a measure of how many out of the 36 items you answer correctly. You’ll also get a list of which answers you missed and a short summary of where your score fits in the distribution (below average, average or above average).

Here is my scoring information:

Your score: 31

A typical score is in the range 22-30. If you scored over 30, you are very accurate at decoding a person’s facial expressions around their eyes. A score under 22 indicates you find this quite difficult.

The correct answers for the ones you missed are: [I added in my answers in brackets so you can laugh at how wildly off some of them are]

17: doubtful [I chose affectionate – this could be a serious gaffe in a social situation!]

18: decisive [I chose bored]

19: tentative [I chose grateful]

28: interested [I chose affectionate – not that far off]

35: nervous [I chose contemplative]

Like the “Fear, Anger, Joy” test, I scored slightly above average. I’m starting to question how much these tests say about a person’s ability to read facial expressions in “live” social contexts.

When I’m taking a test like this, there are two artificial constraints:

I’m forcing myself to intensely focus on and study each facial expression.

I’m given limited options to choose from.

Based on the availability of 4 choices, random guessing alone would result in, on average, 13 correct answers. If you look at the options for each expression, at least one and often two are obviously incorrect (to me, and that may just be me). One of my primary test taking strategies is process of elimination and my approach to this test was no different. If I can eliminate one or two options, my odds of guessing correctly go up significantly.

The artificial nature of the test seems to reduce its value in identifying problems with ToM. When I’m interacting with another person, I’m usually too preoccupied with trying to follow the conversation to spend much time “studying” the other person’s constantly changing expressions.

Often when I’m concentrating on a conversation, I’ll look away from the other person’s face because I find it easier to process information that way. You can’t gather a lot of facial expression data when you’re staring out the window. And, most importantly, there are no prompts. The other person’s expression could be saying literally anything and I have no helpful cue words to narrow that down for me.

Can you guess what this pair of eyes is saying without any cue words to help you? Give it a shot in the comments if you like.

Then there is the fact that recognizing an expression is one thing; attributing causation is another thing entirely. Facial expressions are supposed to provide the clues that allow us to understand what another person is experiencing (the content of their mental state). Recognizing an expression of anticipation is the first step; deducing what the other person is anticipating should logically follow. Together these make up the concept of Theory of Mind.

To say that the Reading the Mind in the Eyes test is a measure of Theory of Mind is only partially true, especially for those of us on the spectrum. The second step of the process–understanding the content of the other person’s mental state–is where I often go wrong.

The Bottom Line

This is an interesting test of static facial expression reading. It’s value as a test of Theory of Mind is less certain.

Sadness feels like the emotion that is most strongly connected to humanity–the one that binds us to each other in some important and primitive way.

I can be happy by myself. I’m as likely to be angry with myself as with someone else. But sadness–I usually need another person to tip me over into feeling sad.

Like my anger constellation, my sadness constellation required a thesaurus. Once I got past grief, depression and resignation, I needed help identifying other types of sad feelings. But unlike my exploration of anger, the thesaurus wasn’t much help this time. I added a few more words to the constellation, but I’m not sure how strongly I experience any of them.

My sadness constellation, sketched out on a Starbucks napkin

Sadness feels like a diffuse emotion, more of a background state of being than a tangible feeling. I’m rarely “actively” sad. I don’t burst into tears when I hear sad news. The last time I cried at a movie, I was twelve. The only book that ever made me tear up was A Prayer for Owen Meany. More than once I’ve sat stoically immobile beside someone I love while they broke down.

My sadness is all undercurrent, twisted up inside me, unable to escape to the surface. This, of course, makes me look cold and unfeeling. The stereotypical cold-hearted aspie.

The first time I confronted my muted sadness was in high school. Junior year. A girl in my class, Karen, was killed in a car accident. The entire junior class attended her funeral, and everyone sobbed from beginning to end. Except me.

I remember standing there, my best friend crying against my shoulder, and feeling . . . confused. I barely knew Karen. She was one of the “fast” girls, part of a small clique that didn’t mix in with the rest of the class much. Many of the girls crying that day in church wouldn’t have hesitated to whisper something mean about Karen or her friends when she was alive. Yet here they were, brokenhearted. This made no sense to me.

Of course I felt sad that she’d died. It was a horrible tragedy. But obviously I didn’t feel as sad as everyone else. If I had, wouldn’t I be crying, too? Soon this thought consumed me. In desperation, I tried to make myself cry by thinking of sad things, by focusing on how sad this day was. I squeezed my eyes tightly closed until they started to water. A few teardrops fell but mostly what I felt was a sick, sinking panic.

While everyone was mourning the loss of our classmate, I alone was wondering: What’s wrong with me? And afterwards, while everyone was getting drunk to soothe their pain, I was hoping that if I got drunk enough, I’d somehow gain access to this mysterious thing called grief.

While I’ve experienced loss since then, my experience of grief is uneven and unpredictable. Sometimes my reaction to death is a sadness so strong and overpowering that it becomes physically painful. Other times I feel like my grief is strangled inside me with only the smallest of escape valves to trickle through. In this sense, grief frightens me. I feel like I haven’t practiced enough and when the big day comes, I’ll be unprepared, like a boxer entering a title match with only a few amateur bouts under her belt.

The rest of my experience with sadness is no less confusing. Most often sadness equals resignation, that sinking feeling that no matter what I do, the underlying characteristics of a relationship or a situation will never change. I used to be more of a fighter, wanting to fix everything and everyone, but increasingly I’m resigned to what is.

This is good and bad. Good because I’m relinquishing my intense need for control; bad because resigning myself to a situation can feel like giving up, and giving up can lead to hopelessness. I put a question mark next to hopelessness because it’s rare and transient. I’m an optimist at heart and if studying economics taught me anything it’s that in the long run, everything can change.

Sometimes I get the blahs. Life looks dull and unappealing. My natural enthusiasm evaporates and I’m left with a gray cast over everything. I’m not sure if the blahs have a specific trigger or if they’re hormonal/cyclical. I’ve seen other aspies talk about being unexpectedly overcome by a general feeling of sadness and not being able to identify the source, which is exactly what I associate with the blahs.

Fortunately, I have an emotional reset button. If I go to sleep feeling down, I’ll usually wake up the next day feeling fine. If I don’t reset overnight, the blahs can stretch into ennui. I’ll get bored and restless, lose my focus, bounce around between tasks accomplishing little or nothing. My routines break down, which only increases my restlessness and lack of focus.

At this point, I need to make a conscious effort to get myself back on track or I risk slipping into depression. A lot of aspies struggle with depression, either as a periodic state or as a clinically comorbid disorder.

My experience with depression has been the less severe, episodic type: a period of feeling down and discouraged, usually in response to something someone has done or said. But I’m mellowing with age, each passing year lessening my need to beat up on myself in response to other people’s slights and judgments. These days I’m more likely to chuck unpleasant interactions into the resignation bin and move on.

That leaves only distress. Is distress really a form of sadness? Some of the synonyms I found for it certainly are: agony, misery, suffering, anguish, torment. I’ve always associated distress more with anxiety or fear, but thinking about it now, I do sometimes feel distress as a form of sadness. I have a fear of abandonment and that fear can trigger a deep-seated, overwhelming distress.

Asperger’s is such a paradoxical condition. I love being alone but I fear abandonment. I don’t often experience unmitigated grief but when I do, it’s overwhelming. I need a thesaurus to help me identify the shape of my feelings, but once I put names to them, they come alive for me in very specific ways.

If you look at my constellation, you’ll see that I added regret and melancholy but after some reflection I put an X next to them. I don’t spend a lot of time looking backward, especially not in a sad way. I’m more of a “learn from it and move on” kind of person. The present moment is more alive for me than any ghost of a memory.

Since learning more about Asperger’s I’ve come to wonder if my muted sadness is a self-protection mechanism. When I wrote about happiness and anger, I talked about the unfiltered versions of these emotions that I experience–the emotions that feel particularly autistic in nature.

I’m far less equipped to handle unfiltered sadness. When it comes, it’s crushing. I think my subconscious instinct is to mute the intensity. There is, after all, only so much sadness a person can handle. So I experience sadness in my own way, inwardly, quietly.

The Purpose of Sadness

I read recently that the “evolutionary purpose” of sadness might be to trigger reflection after a major life event. When we experience loss or a setback, it makes sense for us to withdraw and reevaluate our lives. The result is often a life-changing insight or decision.

If this is the case, my sadness serves me well. I turn inward, often and intensely, searching for answers, insight, a truer path. Even at that funeral in high school, in the absence of grief, I was looking inward. Sad, perhaps, in a very similar way to the rest of the girls, though I didn’t understand it then.

As an adult, I know that the teenaged girls in that church were mourning more than the loss of a classmate. They were mourning the loss of their own innocence. They were confronting the cruelty of life. They were facing the dangers that adulthood holds, the possibility that it could have been any one of us rocketing down the highway one moment, dead at the bottom of a cliff the next.

They were sad for Karen, sad for themselves, frightened, overwhelmed. When I look at it in that context, I see that my feelings weren’t that different from theirs. I struggled with the expression of my sadness–I still do–but it’s been there all along.

Last weekend, I had a meltdown and the next morning I tried to capture some scattered impressions of it to share. I’ve purposely left this raw and unedited, the way it unspooled in my head, to give you a feel for how chaotic a meltdown can be. While meltdowns are different for everyone, this is how I experience them.

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A meltdown can go one of two ways: explosion | implosion.

Explosion

Everything flies outward. Words. Fists. Objects.

Implosion

Have you ever seen a building implode? The charges go off somewhere deep inside and for a moment you swear nothing is going to happen and then seconds later–rubble and dust and a big gaping hole in the ground.

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It feels like a rubber band pulled to the snapping point.

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What I don’t want to hear:

It’s okay.

(It’s not.)

You need to pull yourself together.

(I will, when I’m ready.)

Everything will be fine.

(I know.)

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I’m not looking at you because I don’t want to see you seeing me this way.

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It feels like the end of the world. It feels like nothing will ever be right again.

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What I need:

Space

Time

Absence of judgment

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The headbanging impulse is intermittent but strong. I stave it off as best I can because:
a) my brain is not an infinitely renewable resource
b) headbanging scares other people

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Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.

——————————————-

Please don’t ask me if I want to talk about it, because:
a) there’s nothing to talk about
b) I don’t have the resources necessary for talking

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Evolution of meltdowns over a lifetime:

For my first 12 years, I internalize well. So well that I end up in doctor’s offices and emergency rooms with mysterious headaches, high fevers, stiff necks and stomach bugs. At various times I’m told that I don’t have meningitis, migraines, appendicitis. What I do have . . . that’s never conclusively decided. Things come and go, seemingly without rhyme or reason.

Puberty hits. Hormone surges make internalizing impossible. I slam doors, sob uncontrollably at the slightest provocation, storm out of the house, crank up my stereo. My anger becomes explosive. I pinball between implosions and explosions.

Early twenties, into my thirties, the explosions become rare but the implosions grow worse. I can’t get through an emotionally charged conversation with my husband–let alone a fight–without imploding. The headbanging impulse appears. Muteness takes center stage.

My forties–I can count the explosions on one hand. The implosions are down to a couple a year at most. As the meltdowns have lessened, the shutdowns have increased. This is lateral movement, not progress.

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It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

No. I’m conscious of the boundary between stimming and serious self-harm.

Do I want company?

If you’re okay with sitting silently beside me.

Can you do anything to make me feel better?

Probably not. But you can avoid doing the things that will make it worse.

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Muteness: Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.

——————————————-

My meltdowns aren’t so much about triggers as thresholds. There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back.

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It feels like dropping a watermelon on the pavement on a hot summer day. The bobble, the slip, the momentary suspension of time just before the hard rind ruptures and spills its fruit, sad and messy, suddenly unpalatable. And no one knows whether to clean it up or just walk around it.

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A shutdown is a meltdown that never reached threshold level. Either my threshold is rising or I’m becoming less sensitive to the precursors as I age.

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Meltdowns are embarrassing. A total loss of control. Humiliating. They make me feel like a child. They are raw, unfiltered exposure.

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Panic. Helplessness. Fear.

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Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.

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Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe. If it makes you uncomfortable to see me curled up in a ball on the floor, you should move–remove yourself from the situation.

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There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.

——————————————-

The physical cascade needs to run its course. Interrupt and it’ll just start all over again a few minutes later. Patience, patience.

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a diagnostic instrument that is intended to be administered by a professional in a clinical setting. It was primarily designed to identify adults who often “escape diagnosis” due to a “subclinical” level or presentation of ASD.

The 80 questions on the RAADS-R cover four symptom categories:

language (7 questions)

social relatedness (39 questions)

sensory-motor (20 questions)

circumscribed interests (14 questions)

Its validity as a diagnostic instrument was assessed in a 2010 study in which the RAADS-R was administered to 779 people at 9 different clinics in the US, UK and Australia. This is an impressive undertaking; the variety of testing sites suggests that results of the study are highly generalizable (that they can be extended to the general population). However, like all of the other instrument validation studies I’ve seen, this one also has an imbalance in male-female ASD participants, with a greater proportion of males in the ASD groups.

Pros and Cons of the RAADS-R

Pros:

Self-scoring

Validated in a clinical setting by a multisite study with a large sample size

Provides overall and subscale scores

Includes questions to assess sensory-motor skills

Takes autistic childhood traits into account, even if they are no longer present

Cons:

Many questions phrased as always/only/never

Complex answer choices may be confusing for some

Questions skewed toward social relatedness

Longer than most other tests

Taking the Test

There are a few places you can take the test online:

I took it at aspietests.org because I like the way they present the scores at the end. However, you’ll need to create an account to take the test there. (I did so about 2 weeks ago and they haven’t spammed me at all, which is nice.)

If you’d rather not create an account, you can find a no-personal-information-required version at Aspergian Women United.

Wherever you decide to take the test, the format is the same. It took me about 20 minutes, but I spent a lot of time thinking about some of the questions so you may finish more quickly. You’ll be presented with 80 questions and for each you have to select one of the following:

True now and when I was young

True only now

True only when I was younger than 16

Never true

This answer format, which is unique to the RAADS-R, allows for the fact that some adults on the spectrum had symptoms as children that they no longer experience or vice versa. Having to think about these options can make the test challenging to complete, but do your best to select the most applicable option. Each of the four options has a different score value so accuracy counts on this one.

I often found that none of the four choices was exactly right because the questions tend to be phrased in an “always/never/only” format when what I really needed was a “sometimes” or “most of the time” phrasing. I also found it hard to answer some of the vaguer questions when it came to my childhood because my memories weren’t specific enough or I wasn’t a very self-aware child (which is a clue in itself, I suppose).

Scoring the Test

Each question is scored on a 4 point scale:

3 if the symptom is always present (or never present for “normative” questions)

2 if the symptom is only present now

1 if the symptom was only present in childhood

0 if the symptom was never present (or always present for “normative” questions)

If you take the test at the Aspie Tests site, you’ll receive an overall score plus 4 subscale scores. If you take it at the Aspergian Women United site, you’ll get only an overall score.

In the 2010 study, the scores for those previously diagnosed with ASD range from 44 to 227. The scores for control group members ranged from 0 to 65. The researchers set a threshold of 65, meaning that a score of 65 or greater “is consistent with a clinical diagnosis of ASD.”

It’s interesting to note that only 3% of the people with ASD had a score below 65 and 0% of the control group participants had a score of 65 or higher. There is very little overlap between the two groups, unlike the AQ study results.

In addition to an overall score, the RAADS-R provides 4 subscale scores. The creators of the test emphasize that the overall score is more accurate than any of the subscale scores alone, but the subscales are still informative if you’re curious about where your stronger/weaker areas are. The researchers also state that the RAADS-R is not intended to be administered outside of a clinical setting (such as online or by mail, both of which are valid AQ administration methods).

Here are my scores:

Overall and subscale scores from aspietests.org (click to see a larger version)

Total score: 175

Subscales:

Language: 6

Social relatedness: 97

Sensory/motor: 36

Circumscribed interests: 36

Any of the scores that are highlighted in yellow are above the clinically identified threshold values for ASD.

The averages given in the chart above are for people who took the test at the aspietest site. They tell you how you compared against other people who identify with the same neurotype as you, but little else.

The Bottom Line

The RAADS-R uses a slightly different approach than other autism screening instruments, making its use more appropriate in a clinical setting. However, it still provides an interesting snapshot of autistic traits for those who take it informally.

When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on. I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.

I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.

Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.

Some of the autism books that I borrowed from a nearby town library had a more generic “Health Information Center” sticker on the spine.

And so I was confronted with the question I’d been avoiding: am I disabled?

Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:

woman

wife

mother

entrepreneur

From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.

Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.

As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.

So, yes, I’m autistic and proudly so.

But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:

A physical or mental condition that limits a person’s movements, senses, or activities.

Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.

Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.

There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.

Well, on most days I wouldn’t.

But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.

Do other people see me as disabled?

Undoubtedly some do.

Maybe the real question is, does this bother me?

I guess it does, on some level. Would I be writing about it if I didn’t?

I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.

So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.

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some related posts by other bloggers about labels, how we identify and the significance of language:

I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.

Polly Flinders was the bane of my childhood. I hated her with a passion. Why? Because she made dresses like this that were all the rage for little girls in the seventies:

A classic Polly Flinders dress. I had one just like this, same color and all.

For a four-year-old with tactile defensiveness, that dress was an instrument of torture. I can still feel the exposed elastic biting into my upper arm, the scratchy lace prickling my skin, the rasp of the tag on the back of my neck, the smocking bunching up across my chest.

Thanks to Polly Flinders and her ilk, I was branded a tomboy early in life. Not because I didn’t like dresses, per se. The way clothing feels is ten times more important to me than how it looks and “boyish” clothes (jeans, plain cotton shirts) were more comfortable.

I still shop for clothing based on feel first and look second. Where a lot of women see exciting new outfits, I see this:

Thanks to my tactile sensitivities, I’m a defensive shopper when it comes to clothing.

Clothes shopping is a matter of eliminating the things I know will be too uncomfortable then choosing what I like from the remaining options. If there are any.

When I do find something I like–and by like, I mean something that’s comfortable–I tend to buy it in multiples. I have a rainbow of v-neck t-shirts and long sleeve tees, all exactly the same brand, style, material and cut. Last weekend, I found a soft comfy sweater at Old Navy and bought it in three different colors.

When I like something, I’ll wear it until it literally falls apart. The few things I really love–my favorite pair of jeans, my softest t-shirt–I put on as soon as they come out of the wash. They rarely get hung up in the closet.

That isn’t to say that I live in tees and jeans. I have some dressier clothes that are comfortable. I try to dress both comfortably and appropriately for the situation. You’re just not going to find me greeting my husband at the door in pearls and heels like June Cleaver. Continue reading Tactile Defensiveness→

This week for Take-a-Test Tuesday, I took the “Fear, Anger, Joy” test. It’s not an Asperger’s test, but it does measure something that aspies often struggle with: reading emotions through facial expressions. Also, since the last two tests have been question-oriented, I thought a visually-oriented test might be a nice break.

testmybrain.org is a citizen science project run by Harvard University. The website is used to conduct large-scale behavioral research studies with the goal of developing neurocognitive tests. By taking one (or more) of the tests on the website, you contribute to ongoing research and you also get a nice little write-up about your results, what they mean and why the research is being done.

I like the interactivity of the tests and the novel approach that Test My Brain takes. For example, the test that I’m taking today, “Fear, Anger and Joy,” is a test of the ability to identify emotions in facial expressions. Unlike some of the other facial expression recognition tests out there that allow you to study an expression for an unlimited time before identifying it, this test only allows you to see the facial expressions for a couple of seconds. I feel like this is closer to what happens in social situations, where facial expressions are fleeting.

Pros and Cons of Fear, Anger, Joy

Pros:

Automated and self-scoring

Better simulates social situations by limiting viewing duration for each set of faces

Detailed explanation of scores

Results include average scores and percentile ranking so you know how you measure against others who’ve taken the test

Explanation of why the research is being done with a link to more info

Taking the test contributes to ongoing research

Cons:

Test is part of active research so no conclusive results

No direct link to AS/autism/autistic traits

Forced choice between 2 options equals a 50% chance of being correct when guessing

Taking the Test

This test takes 15 to 20 minutes so be sure you have the time to complete it before you begin. To take the test, go to testmybrain.org and click on the Go! button next to the “Fear, Anger, Joy” test (you may have to scroll down to find it–the order of the tests changes).

You’ll be asked to make your browser window large. I kept mine the size I normally use and it worked fine. The next screen is a simplified informed consent form. You’ll be told what the research is being used for and asked to consent (agree). Once you do, you’re officially a research subject! The next screen collects some demographic information. It’s all anonymous–you won’t be asked any identifying information to get your results or anything annoying like that.

Once you’ve entered your demographic info, you’ll begin the test. There are a couple of practice questions before the first set of faces appears. You’ll see two faces side by side and be asked to identify which is happier, sadder or angrier. There are 56 sets of faces for each emotion. That sounds like a lot until you realize that each set is visible for only a couple of seconds.

After you’ve completed all three sets of faces, you’ll be asked if you encountered any technical problems or if you cheated in any way. Researchers think of everything. Once you confirm that your results aren’t tainted, you’ll be taken to the scoring page.

Scoring the Test

The aim of the test is to evaluate how well people can detect subtle differences in the level of emotion conveyed by an expression. I found the expressions presented at the beginning of each to be obviously different. One face was clearly much happier, sadder or angrier.

As each section progressed, the differences in the expressions became much less obvious and I found myself guessing more frequently. I also realized that scared and happy can look similar to me. The same is true for scared and angry.

Here are my scores (out of a possible 56 on each section):

Which face is angrier?: Your score was 45. The average score is 45.18.You scored higher than three out of every ten people who took this test.

I scored slightly below average on the anger section.

Which face is happier?: Your score was 54. The average score is 49.49.You scored higher than seven out of every ten people who took this test.

Nearly a perfect score on the happy faces!

Which face is more afraid?: Your score was 47. The average score is 43.18.You scored higher than six out of every ten people who took this test.

And a bit above average on the afraid faces.

I did better than I expected to. I’m not surprised that I score the highest on the happy faces because happiness is (for me) most clearly expressed around the mouth (smiling) and that’s where I most often focus my gaze.

Anger forced me to look at the area around the eyes more and I had to purposely do that. For fear, I quickly found a pattern that helped me: furrowed brows or foreheads. I spent the rest of the “afraid” section looking first (and sometimes only) at the foreheads of both people to see which looked more scrunched up. Maybe I should have confessed to cheating?

Apparently I have trouble taking in a facial expression as a unified whole. I seem to look at the various parts for clues and then try to sum them up.

I also found my perseverative nature kick in when I had to change from finding the angrier face to finding the happier face. On the first of the happy practice sets, I chose the angrier face because that’s what I’d been doing for the previous 58 trials. Oops.

The Bottom Line

This test was fun to take and I felt like I learned something about how I process facial expressions.

In honor of the annual airing of Rudolph the Rednosed Reindeer this coming Tuesday.

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When I was in elementary school, I was fascinated by the Island of Misfit Toys.

If you have no idea what I’m talking about, here’s an outtake from Rudolph the Rednosed Reindeer. Rudolph and his friends have just found themselves on the Island of Misfit Toys and the toys are describing their problems:

The Island of Misfit Toys is like aspie heaven–a place where no one measures up to conventional expectations and you’re not even allowed to stay if you might be the least bit “normal.” A place where it’s okay to be a bird that swims or a cowboy who rides an ostrich.

Because that’s the real issue with living in a neurotypical world, isn’t it? Conventional expectations. If 99% of people had aspie brains instead of neurotypical brains, then aspies would be the baseline. Imagine a world where making small talk was considered dysfunctional and hugging someone you’ve just met was frowned upon.

But we aspies live in a world filled with norms and expectations that we often don’t understand or that we find ridiculous. A world that isn’t going to conform to our standards. So the question becomes: move to the island of misfit toys or give up swimming and learn to fly like the other birds?

Much of the self-help information out there for adults on the spectrum is focused on learning to fly in formation. Learning to assimilate, to pass, to appear less autistic.

To a certain degree, assimilating is beneficial. If you’re the train with square wheels or the boat that sinks, learning basic life skills is necessary. We live in an NT world and refusing to acknowledge that fact is going to result in frustration and bitterness. A certain amount of assimilation makes life easier. Given all of the challenges aspies face, that doesn’t seem like a bad thing.

But what if you’re the cowboy riding the ostrich?

Well, does the ostrich make you happy? Can you ignore the strange looks and snide comments from some of the other cowboys? If you’re like me, you’ve probably developed a certain capacity for ignoring what other people think about you. Maybe you even like defying conventional expectations.

As adaptive strategies go, flying your freak flag sounds like a pretty good one to me.

Let’s Be Independent Together

Early on in Rudolph the Rednosed Reindeer, Rudolph and Hermey decide they’re going to fly their freak flags. They’ve had it with conventional expectations. Their efforts at assimilation have failed and they’re tired of being ridiculed for being different.

They come up with a solution that’s wonderfully Aspergerian: they decide to be “independent together.” It’s meant to be a silly play on words, but there’s a lot of wisdom in that phrase.

To be independent together is to accept our differences, to celebrate what makes us uniquely autistic, each in our own way.

To be independent together is to walk our paths, side-by-side, but not in lockstep.

To be independent together is something we can each do, right now, today.

Just look around until you find one of those unconventional cowboys. When you do, give ’em a smile and say, “Hey, that’s a cool ostrich you’ve got there.”

It’s that simple.

To be independent together is something we can each do, right now, today.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.